Written by ‘M.D.', the nom de guerre of Dr Phil Hammond
MD's greatest regret as a junior doctor was not to take the time to understand ME (myalgic encephalopathy). As a result, MD was infected with the same prejudices as many of his peers, namely that ME was largely psychological, and an illness of the middle classes (“yuppie flu”).
Both Beliefs are entirely wrong and have caused huge distress and damage to those with ME. Medicine has particularly failed those with severe ME, many of whom have lived for decades with a very disabling disease and the enduring sleight that it's “all in the mind” or due to “faulty beliefs”. Although ample evidence exists of biological abnormalities in patients with ME, we are still some way from definitive pathological tests and effective drug treatments.
ME is often used synonymously with chronic fatigue syndrome (CFS) but the illness is far more than fatigue. MD's view – working in an NHS clinic for young people with chronic fatigue – is that “CFS/ME” is a cluster of disorders which centre not just on severe, disabling fatigue but on post-exertional malaise (PEM), This means that previously very active patients can suddenly crash after physical or cognitive activity, which completely wipes them out for at least 24 hours and often much longer, with multiple unpleasant symptoms. Anyone who has lived through or observed such crashes is left in no doubt that the disease isn't psychological.
CFS/ME is often – but not always – triggered by a viral infection. Nausea, severe pain, headaches, sensitivity to light, sound and touch, cognitive dysfunction and dizziness caused by faulty blood pressure control (orthostatic intolerance) are common. Patients also suffer poor and unrefreshing sleep, waking up feeling utterly exhausted. A high reduction in energy is accompanied by an inevitable reduction in previous levels of activity. In young people CFS/ME is the commonest cause of long-term school absence, and the threat of legal action for poor attendance is all too common.
In 2013, the US Institute of Medicine reviewed more than 9,000 research articles and concluded that ME has a biological basis and is a “serious, chronic, complex systemic disease” characterised by neuro-immune abnormalities causing patients to be severely intolerant to exertion. Other studies have shown abnormalities in cellular metabolism, gut bacteria and gene expression in some patients.
The ME Association's Christmas Appeal is raising funds to analyse 300 blood samples from a CFS/ME biobank, looking at metabolomics – chemical clues that are left behind after changes in cells – picking up on research from the University of California which suggested that CFS/ME could be the body going into a state of semi-hibernation.
Many other examples of innovative research were present at the recent International Association for CFS/ME conference in Fort Lauderdale, with chronic inflammation a recurring theme. But even the hard core researchers admit it could be years before we have definitive tests and effective drug treatments. Funding for further trials is needed.
The challenge in the meantime is how to help the 250,000 CFS/ME patients in the UK who need it now. Non-pharmacological approaches to CFS/ME include trying to establish a regular sleep pattern and to manage activity levels to avoid booming and busting, and the horrible payback of post-exertional malaise. This can be hard to do, but in MD's experience many young people who have recovered enough to engage in a managed activity programme do very well, probably because stabilising sleep and managing activity levels affect metabolism and hormone levels, such as cortisol. Cognitive behavioural therapy can help establish these recovery routines and manage anxiety, but isn't itself a cure. Many recover in time by gradually increasing activities when they feel able. Some get recurrences.
Other patients are simply unable to increase activity and exercise levels, and some are made worse by trying. All interventions – drug or non-drug – can cause harm as well as benefit, and there are a significant number of patients with severe CFS/ME who are not helped by any current interventions. Research needs to focus on those most severely affected, and we all need to focus on believing in ME. It is a proven and classified neuro-iimune disorder, from which some people recover and some don't. Yet.